Centre for Social Research in Health, UNSW Sydney, Sydney, NSW, Australia.
National Addiction Centre, Kings College London, London, UK.
Patient. 2019 Apr;12(2):259-265. doi: 10.1007/s40271-018-0332-6.
Growing international interest in mechanisms to capture and measure experiences and outcomes of health interventions from the patient perspective has led to the development of patient-reported measures (PRMs) across many areas of medicine. Although PRMs are now well utilised in some settings, the rapidly expanding area of direct-acting antiviral (DAA) treatments for hepatitis C has received remarkably little attention. In addition, questions are also being raised about the extent to which patients have been involved in the development of PRMs, which are primarily designed to reflect the patient perspective. In this context, the aim of this paper was to explore the possibility of developing a new PRM for use in hepatitis C DAA therapy that would also be acceptable to the patient group, in this case people who inject drugs (PWID).
The study was based on a participatory design that included a peer researcher and foundational qualitative research including semi-structured interviews with 24 PWID with hepatitis C to inform the development of the PRMs. Stage 2 included four focus groups of six PWID with hepatitis C, who were asked to complete the draft measures and provide feedback.
Participants responded positively to the draft PRMs. The results indicate that participants' concerns during DAA treatment are often not sufficiently attended to in clinical settings. In the light of this finding, participants reported that PRMs have a positive role to play in the negotiation of patients' care during DAA treatment.
The findings show that utilising a participatory approach to the development of PRMs for DAA HCV treatment with PWID not only provides a way to measure experiences and outcomes of treatment from the patient perspective, but also provides a means for highly marginalised patient groups to have a say in and negotiate their care in ways that might not otherwise be possible.
从患者角度捕捉和衡量卫生干预措施的经验和结果的机制引起了国际上越来越多的关注，这导致了在许多医学领域开发患者报告的测量工具（PRM）。尽管 PRM 在某些情况下得到了很好的应用，但直接作用抗病毒（DAA）治疗丙型肝炎的快速扩展领域却受到了极大的关注。此外，人们还对患者参与 PRM 开发的程度提出了质疑，而 PRM 主要用于反映患者的观点。在这种情况下，本文的目的是探讨开发一种新的 PRM 的可能性，该 PRM 也可用于丙型肝炎 DAA 治疗，并且也能被患者群体接受，在这种情况下是注射毒品者（PWID）。
该研究基于参与式设计，包括一名同伴研究人员和基础定性研究，包括对 24 名患有丙型肝炎的注射毒品者进行半结构化访谈，以了解 PRM 的发展。第二阶段包括四组患有丙型肝炎的六名注射毒品者的焦点小组，他们被要求完成草案措施并提供反馈。
参与者对草案 PRM 做出了积极的回应。结果表明，在临床环境中，参与者在 DAA 治疗期间的关注点往往没有得到充分的关注。根据这一发现，参与者报告说，PRM 在 DAA 治疗期间协商患者护理方面发挥了积极的作用。
研究结果表明，利用参与式方法为 DAA HCV 治疗与 PWID 一起开发 PRM，不仅为从患者角度衡量治疗的经验和结果提供了一种方法，而且还为高度边缘化的患者群体提供了一种发言权，以协商他们的护理方式，否则可能无法实现。
